Patient and public involvement

People with experience of cancer guiding research aims around cancer.

Patient public involvement (PPI) ensures that patients’ voices are heard and can influence research and policy. Patients and the general public provide important insights from their own lived experiences. Keeping patients closely connected to ongoing solutions and to researchers ensures the work undertaken is both meaningful and relevant to patients' and carers' needs. Patients are able to raise concerns and input into the direction of research. Strengthening connections between researchers and the public can also enable the general public to see the importance of investing in their own health and help in addressing inequalities in health research.

Within ICEP, there are a number of important ways that PPI can and does help our research. A key part of our programme is our User Reference Group, a diverse group of individuals who have lived experience of cancer as well as wider expertise in connecting health research with patients and the wider public. Members of this group have worked with researchers to develop plain English summaries of our research themes and provided feedback on grant applications, PhD projects and feasibility trials using electric bikes. They are available to help researchers ensure documents, presentations and messaging are more accessible to a wider audience, at any stage in the research process.

This group brings important new connections and insight, which can open other avenues of research and help researchers with applications for funding. They can help researchers to think about what is feasible when designing research activities that involve the wider public. They can also help with recruitment to trials. Early involvement in research can help create a more substantial grant proposal, as well as potentially highlighting misconceptions of patient needs during trials.

Some of the members of the ICEP User Review Group in June 2023

User Reference Group

Members of the User Reference Group are drawn from across the UK and have a range of ages, ethnic backgrounds and cancer experiences. The group is available to support all ICEP researchers. We hold regular clinics for researchers to share ideas and get feedback from the group.

If you want advice or support from the group at any time, contact Alison Denny.

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